Article: The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I

Article: The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 201

You can view the page at http://forums.phoenixrising.me/content.php?529-The-Biggest-Research-Funder-in-the-World-on-ME-CFS-The-NIH-on-ME-CFS-in-2012-Pt-I

 

Good point about how the NIH is able to fund what it likes to fund, yes, absent some type of discovery there seems to be little hope right now for more NIH funding for CFS. I think you made a good point about needing a new discovery, we need a reboot, a new identity. CFS and ME are already 'legacy' illnesses and the policies of disregard are well established. We need a new spin on an old illness. Thanks for the summary, I think the NIH budget should be a larger part of the overall CFS discussion.

 

"Interestingly enough, the next NIH priority is on why moderate alcohol consumption causes such fatigue and debilitation in ME/CFS an intriguing but wholly unstudied subject which suggests this group is well versed in ME/CFS symptoms."

What this suggests is that Dr. Susan Maier has a background in studying alcohol not ME/CFS. Whether this is a productive line of research to pursue is questionable. Not that many studies have looked at alcohol use in patients and those that have including Dr. Simon Wessely have concluded that alcohol use is not a large factor among patients and that many choose not to imbibe. Of course he may not have been studying ME, but is he right? Does anyone know of a study or studies showing that alcohol is directly related to post exertional fatigue?

As well, many patients already have a great deal of difficulty getting SSDI when they are no longer able to work and any suggestion of alcohol use/abuse or drugs, regardless of why the person is disabled, makes it close to impossible for the individual to get disability benefits.

There are so many possibly more productive lines of research that have already been started that it may be better to pursue those lines of research given the minimal amount of funding. Just food for thought.

 

Thanks for this analysis, Cort.

Maybe I've gotten jaded and skeptical, but I get suspicious when agencies like the NIAAA and the NIA with no obvious connection to ME/CFS get mentioned. I'm afraid that some study that is only very distantly related to ME/CFS will get funded from the meager funds we do get. Like when they fund a study on tooth pain and say it's related to ME/CFS because people with ME/CFS have a lot of pain, so learning about pain will help us.

 

But why do so many patients choose not to imbibe?

Personally, I'd love to still be getting drunk, but from the point of first getting ill I've found that alcohol had a really weird and unpleasant affect on me. Understanding why that is (and it seems quite common for CFS patients) could help us understand more about the illness.

Thanks for the write up cort.

 

Good point about how the NIH is able to fund what it likes to fund, yes, absent some type of discovery there seems to be little hope right now for more NIH funding for CFS. I think you made a good point about needing a new discovery, we need a reboot, a new identity. CFS and ME are already 'legacy' illnesses and the policies of disregard are well established. We need a new spin on an old illness. Thanks for the summary, I think the NIH budget should be a larger part of the overall CFS discussion.

There are some intriguing studies ongoing right now. I imagine, though, - absent a big, rigorous Rituximab study that is effective - which certainly a possibility the best we can hope for is a slow increase in funding as the current studies pan out as hopefully they will.

I certainly agree about NIH funding being a VERY important part of the CFS discussion - maybe the most part of the CFS discussion as they are the ones with the money and they do fund some really complex and interesting studies.

 

"Interestingly enough, the next NIH priority is on why moderate alcohol consumption causes such fatigue and debilitation in ME/CFS an intriguing but wholly unstudied subject which suggests this group is well versed in ME/CFS symptoms."

What this suggests is that Dr. Susan Maier has a background in studying alcohol not ME/CFS. Whether this is a productive line of research to pursue is questionable. Not that many studies have looked at alcohol use in patients and those that have including Dr. Simon Wessely have concluded that alcohol use is not a large factor among patients and that many choose not to imbibe. Of course he may not have been studying ME, but is he right? Does anyone know of a study or studies showing that alcohol is directly related to post exertional fatigue?

As well, many patients already have a great deal of difficulty getting SSDI when they are no longer able to work and any suggestion of alcohol use/abuse or drugs, regardless of why the person is disabled, makes it close to impossible for the individual to get disability benefits.

There are so many possibly more productive lines of research that have already been started that it may be better to pursue those lines of research given the minimal amount of funding. Just food for thought.

I agree - and I would be VERY surprised if anyone ever did a study on why alcohol consumption so effects many people with ME/CFS so strangely. I was surprised that they even knew of this kind of strange fact. I don't think alcohol consumption is even distantly related to CFS - its kind of interested that it seems to wipe some people out so much.

 

Thanks for this analysis, Cort.

Maybe I've gotten jaded and skeptical, but I get suspicious when agencies like the NIAAA and the NIA with no obvious connection to ME/CFS get mentioned. I'm afraid that some study that is only very distantly related to ME/CFS will get funded from the meager funds we do get. Like when they fund a study on tooth pain and say it's related to ME/CFS because people with ME/CFS have a lot of pain, so learning about pain will help us.

It's happened before! I don't know why they're in there at all. Next I'll do a list of the studies underway and I'll look at which Institutes are funding studies. (Hadn't thought to do that ). As to funding - there is no set amount for ME/CFS but sometimes they do include strange studies in 'CFS' funding.

 

Thanks Cort.

I found it very illuminating. The news that NIH has now included ME alongside CFS brings them into line I suppose with the UK. This would have been 'good news' even last year for many I suspect in the USA but now of course with the ICCME it might be seen as rather dilutive seeing as both terms are now viewed synonymously.

Personally, I am still - as you know - rather confused about where the ICCME will come into play within the whole ME/CFS spectrum, but from what you have said above - the NIH at least has left the door open to more restrictive criteria which I think is a good indication for change.

The ICCME and other criteria - including the CCC to a lesser extent - will have to be 'approved' before they can be used in research let alone as a means of clinical diagnosis; and I look forward to hearing more about this process and any resulting debates. Indeed, given the changes above, I suspect it will be easier for the CCC to become an accepted 'norm' and harder for ICCME to establish (re-establish) ME as a distinct disease. But we shall have to wait and see.

 

Thanks for another interesting and analytic article Cort. Must say I never thought otherwise than "essentially the same disorder" and "collection of errors across multiple systems".

 

RE: Alcohol.

Some people might be interested in:
Woolley J, Allen R, Wessely S. Alcohol use in chronic fatigue syndrome. J Psychosom Res 2004: 56: 203-206
Free full text: http://simonwessely.com/Downloads/Publications/CFS/160.pdf

Current ME Association poll:
http://www.meassociation.org.uk/

What has happened to your alcohol intake since developing ME/CFS?
No longer drink alcohol (49%, 593 Votes)
Decreased (33%, 399 Votes)
No change (6%, 68 Votes)
Increased (4%, 53 Votes)
Never drunk alcohol (8%, 105 Votes)

There was also a Dutch study - will try to look up details now.

 

This study looked at alcohol consumption:

Goedendorp MM, Knoop H, Schippers GM, Bleijenberg G. The lifestyle of patients with chronic fatigue syndrome and the effect on fatigue and functional impairments. J Hum Nutr Diet. 2009 Jun;22(3):226-31. Epub 2009 Feb 17.

Here are a few notes I made on it (not all on alcohol):

Conclusions: CFS patients tend to lead a healthier lifestyle compared
to the general Dutch population. However, no relationship was found
between lifestyle factors and fatigue severity and functional
impairments in CFS.

Useful finding.

They make the second line sound like a bad thing but it's not necessarily at all.

A couple of other findings:
Out of the 247, there was only one person who had an "unhealthy alcohol intake" defined as follows:

"Female patients drinking more than two alcohol units a day and male patients drinking more than
three alcohol units a day were defined as having an unhealthy alcohol intake"

Regarding, "Significantly more female CFS patients abstained from alcohol", it's interesting as this is actually all from the 18-44 group. In the 45-65 group, numerically there were fewer CFS patients who abstained than the normal population.

Alcohol abstinence % (n) P
Female CFS Age:1844 35.5 (43/121) <0.001
Dutch population 20.1 (278/1384)

Alcohol abstinence % (n) P
Female CFS Age:4565 17.9 (10/56) 0.360
Dutch population 19.9 (342/1722)

The numbers for male were too small:

Alcohol abstinence % (n) P
Male CFS Age:1844 25.0 (10/40) *
Dutch population 9.6 (130/1356)

Alcohol abstinence % (n) P
Male CFS Age: 4565 13.3 (4/30) * 33.3 (2/6) * 66.7 (4/6) * 0 (0/6) *
Dutch population 8.2 (138/1688)

BOLD, P < 0.01 was considered statistically significant. *These differences were too small to test.
BMI, body mass index; CFS, chronic fatigue syndrome.

~~~~~~~~~~~

"In addition, no differences in fatigue
severity (P = 0.525) or functional impairments
(P = 0.055) were found between patients having none or
one unhealthy lifestyle factor and patients having two or
more unhealthy lifestyle factors."

P=0.055 is nearly significant.

What they don't say is one can see from the table that is the opposite of what one might expect: on all six measures of "unhealthiness", the people with the "unhealthy" lifestyles score numerically better on functional impairment i.e. are less functionally impaired.

Also for BMI, there is nearly a statistical significant difference between those with an unhealthy BMI (BMI>25) and those with a healthy BMI (p=0.039). Those with an unhealthy BMI have a better fatigue score! (47.7 (SD: 5.1) vs 50.2 (SD:5.0))
----------

 

Maybe our blood could be used as a cure for alcoholism.

 

Maybe our blood could be used as a cure for alcoholism.

I wouldn't want to risk moving from the respectability of alcoholism to a disdained diagnosis like CFS.

I've always been a bit surprised that there hasn't been more interest in trying to understand the mechanism which leads to many of those with CFS responding poorly to alcohol. It seems like one of the few solid starting points science has had to to get going, and it's been known of for a long time (along with EBV and certain other infections being triggers).

 

RE: Alcohol.

Some people might be interested in:
Woolley J, Allen R, Wessely S. Alcohol use in chronic fatigue syndrome. J Psychosom Res 2004: 56: 203-206
Free full text: http://simonwessely.com/Downloads/Publications/CFS/160.pdf

Current ME Association poll:
http://www.meassociation.org.uk/


There was also a Dutch study - will try to look up details now.

Interesting Dolphin - I had no idea that the ME Association had surveyed this - big declines in alcohol use. When I'm feeling better I can handle alcohol better but when I've over excised, etc. - boy does even small amounts do a number on me. I hope at some point someone can figure out why....I think it must be meaningful in some way altho I agree its hardly a priority.

 

:Sign giggle:

Maybe our blood could be used as a cure for alcoholism.

 

Well as someone who could not touch a drop for ten years I wouldn't be much help.

 

I don't understand why this is such a big mystery to you all. It's the same mechanism that causes us to have problems with medicines, supplements, chemicals, cleaning products, etc., ie inability to detox normally, ie lack of glutathione in the liver, ie methylation cycle block.

 

Yes seems to be for me too caledonia (seems quite poisinous).

 

Thanks Cort.

I found it very illuminating. The news that NIH has now included ME alongside CFS brings them into line I suppose with the UK. This would have been 'good news' even last year for many I suspect in the USA but now of course with the ICCME it might be seen as rather dilutive seeing as both terms are now viewed synonymously.

Personally, I am still - as you know - rather confused about where the ICCME will come into play within the whole ME/CFS spectrum, but from what you have said above - the NIH at least has left the door open to more restrictive criteria which I think is a good indication for change.

The ICCME and other criteria - including the CCC to a lesser extent - will have to be 'approved' before they can be used in research let alone as a means of clinical diagnosis; and I look forward to hearing more about this process and any resulting debates. Indeed, given the changes above, I suspect it will be easier for the CCC to become an accepted 'norm' and harder for ICCME to establish (re-establish) ME as a distinct disease. But we shall have to wait and see.

I agree about the CCC being easier and it would have been great for the PA to specifically state that they supported studies which compared the efficacy of different definitions - that would have been really nice but they didn't do it. Still they did move forward; researchers are not any more specifically required to use Fukuda (I imagine that they still will but they will compare it with the CCC/ICC). and that's good news.